Ulcerative Colitis…more like Uncomfortably Confused.

Ragin Cajun ChelseaMeet the Ragin Cajun:

I am a two decade old Ragin Cajun. I was born in Houston, Texas but I now go to school in Lafayette, Louisiana. In addition to being a full-time student I also work as a live-in nanny to 2 little girls.

Some more about me:

I am a member of Delta Delta Delta. A few of my idiosyncrasies include exercising, being sarcastic, busting out in a British accent at inappropriate times and wasting hours Facebook stalking. A few of my obsessions are Friends, Harry Potter, and eating.

Symptoms Right Now:

Diarrhea, loose stool, chronic fatigue, urgency, and abdominal cramping.

Ulcerative Colitis…more like Uncomfortably Confused.

I have had UC symptoms for 3 years of my life. It all started with blood in my stool my junior year of high school. It didn’t get really epic until my freshman year of college, the blood had continued with every one of my BMs so much so that it just became routine. I had just moved into my aunt’s house to be her full-time nanny to her 2 children, Bella and Ava. Ava was a newborn at the time and my job description soon changed from “nanny” to “second mom.” I would take care of her all day long, go to my night classes, and sneak in a nap until it became time to do the 12am, 3am, and 6am feedings. Needless to say, I was stressed. So stressed that I hadn’t noticed that my bowel movements had changed from stool mixed with blood to strictly blood. So stressed that I failed to register my daily stomach aches that forced me into the fetal position were not normal. So unbelievably stressed that my 5’1 1” 130 lb body had shrunk down to a 107 lbs over the course of one semester and the only thing I recall thinking is that my clothes were getting a little big.

The beginning of my spring semester was met with a GI appointment where the doctor sent me home with a lab sheet to get some blood drawn that afternoon but I was running late for one of my classes so I figured I could just go the next day, which I did. I went the next morning and didn’t worry. I still wasn’t worried when I got a call from the Physicians’ Assistant at the GI office. She was calling to say that my hematocrit blood level was 6.69 and they needed me to go to my nearest ER. This started the longest 2 months of my life.

Me with Ava

Me with Ava

I was hospitalized that night and my mother came in from Houston to stay with me. I was in that hospital for 6 days. In that time I received 3 blood transfusions, 2 fresh frozen plasma, 2 bags of iron, 2 bags of potassium, and a colonoscopy. My doctor said that the sigmoid section of my colon was so ulcerated and inflamed that he only went up 6 inches because he was afraid of perforating the lining if he went any farther. So instead of searching for a way to stop the bleeding he gave me new prescriptions and released me from the facility. My mom told me that in light of this experience and the state of my colon her and my dad thought I should go back to Houston until I had healed enough to go back to my aunt’s house. I agreed and we headed home much to my aunt’s dismay. I also withdrew from all of my courses.

I was out of the hospital for all of one week when my Houston GI sent me out for another blood test since I was not able to keep down anything. I was so ill that the 20 minute wait sitting next to the woman wearing an obscene amount of perfume brought me dry heaving to the bathroom. I looked like a drug addict, sweating, huddled in the chair, just trying not to vomit. Yet I still didn’t grasp the full gravity of the situation since I still wasn’t worried until the PA called me again to tell me I needed to go straight to the nearest ER, my levels were dangerously low again.

mardi gras 2013

Mardi Gras 2013! Having Some Fun

This new hospital stay lasted for 17 days in which I received another blood transfusion, another colonoscopy that showed that 97% of my colon was ulcerated, a PIC line to get my nutrients, started Remicade, a recommendation to get a colostomy, and a transfer to the Houston Medical District to meet with a surgeon to accomplish the removal of my damaged colon. That third hospital stay lasted 16 days where I got my 2nd batch of Remicade, got to keep my colon, and developed an addiction to the Sweet Tea at the McDonald’s in the lobby of the hospital.

That whole experience was one year ago and I still struggle with why that had to happen. I lost 37 days of my life, incurred thousands of dollars of debt, and started an infusion system that will continue for the foreseeable future. I am only 20 years old and I just get so overwhelmed. My family and friends try to be supportive but they truly can’t comprehend any of it. When I get so drained that I have to lie down for 20 minutes I know they’re just thinking “Why cant you just suck it up?” Or when my joints are so swollen I can’t walk up the stairs to my class and I wait for the elevator I look at the kid in the wheelchair next to me and think to myself “what the hell is wrong with me, I am not as incapacitated as that guy and I can’t even walk up the stairs”

Wearing delta jerseys

Wearing delta jerseys

In the middle of one of the worst cramping extravaganzas when I decided to Google “I have UC” and magically found this site. I started reading and realized, I’m not a freak. There are others suffering from not only the disease but the side effects of the shit that is supposed to make us all better.

For those of yall who have had this disease for a while:

  • Does any of this get any easier?
  • Do the Remicade treatments get easier to fit into your schedule?
  • Do the treatments get easier on your body as the time goes?  Cause to be perfectly honest I am tired of having cankles and knees the size of my hips.

Medications I’ve Dabbled In:

urrently I am on:
Remicade (every 6 weeks)
Azathioprine (Imuran)
Lialda

In the past I have taken:
Prednisone (I hated all the side effects with this steroid)

written by Chelsea

submitted in the colitis venting area

15 Responses to “Ulcerative Colitis…more like Uncomfortably Confused.”

  1. AdamMarch 15, 2013 at 9:15 am #

    Hey Chelsea,

    It does get easier as time goes on, but still there are always going to be ups and downs.

    One things for certain, if you keep that smile on your face (like you have in ALL your pictures), life’s gonna be just fine for you!

    Thanks for sharing your story,

    -Adam

    • Chelsea Daniels
      ChelseaMarch 18, 2013 at 9:28 pm #

      Adam,

      Oh thank baby jesus, it gets easier, because to be honest..I dont know how much more I can take. (that may be just me being dramatic.) I am going to do what you said to do though and keep smiling!

      Thank you for making this website.
      Chelsea

  2. JMarch 15, 2013 at 2:14 pm #

    Dear Chelsea,

    Welcome to the crazy world of chronic illness. It sounds like you have endured some terrible episodes. The good news is that you are now aware of the name of your disease and that there are medical studies and medical solutions that you can try. I’m a woman who has had UC for 40+ years. Really, it was the dark ages back then for patients with UC.

    The most important thing you can do to help manage your illness is to find a GI specialist-gastroenterologist- who you feel comfortable with. Be a good advocate for yourself and learn as much as you can about your disease.

    One of the confusing aspects of UC is that not all patients respond to medications the same way. Keep track of your symptoms and be prepared to ask your GI doc for help finding a medication that will be effective for you.

    Many of us who have UC have found relief by following the SCD diet. Not everyone benefits, but many of us do. Read the submissions that are here on Adam’s website and you will find a community of folks who share what has, and what has not, worked for them.

    I was about your age when I was diagnosed and I do recall spending years in complete denial that I had an incurable disease. You must know other young people who have been diagnosed with diabetes or other “incurable” or chronic diseases. In many ways UC is similar, yet is a lot less predictable. Sometimes medications stop working and managing life when you are in pain, exhausted, or need a rest room can be scary. By the way, your swollen joints are an extra-colonic manifestation of UC.

    Take care of yourself and I hope your are encouraged to learn as much as you can about UC and to accept the fact that although you have a chronic illness, you can still enjoy a wonderful life.

    Wishing you improving health!

    • Chelsea Daniels
      ChelseaMarch 18, 2013 at 9:52 pm #

      J-

      Thank you for reading my story. The thing I find most difficult about taking more medications is that the stuff to make my colon better all have horrendous side effects themselves. You almost have to choose between a bloody, ulcerated colon or whatever mess the medicine will get you into. Do the side effects get better or worse as time goes on?

      Crazy is an understatement for my experiences I think, I did get to ride in an ambulance though! In all seriousness though, the PICC line nutrients were the worse with the added prednisone, I got fat with the IV nutients and had a moon face to match!

      I’ve seen some of the postings on the SCD diet but the no bread and pasta thing scares me. In your experience are the benefits with it worth giving up the tastes? Also Have you been able to eat mexican salsa with jalapenos? I live in Louisiana where if it’s not spicy its not right.

      Like you said, it must have been your age cause I am still in denial. I understand why you’e comparing the two but it’s so hard for me to compare ours with cause there is so much more research on that disease and we’re kind of shoved in the corner like a lonely stepchild. Especially since noone knows what UC is…like how do you explain it to someone ignorant? “Um I bleed out of my ass”…not the best conversation starter. Have you figured out a way to side swipe the “why do you keep going to the bathroom?”
      Thanks,
      Chelsea

      • JMarch 19, 2013 at 12:38 pm #

        Dear Chelsea,

        Hang in there. It will get better. Not all medications cause side effects or nasty reactions. Each individual will respond differently depending upon genetics, age, and other medical conditions.

        Medical doctors and researchers understand that patients do respond differently to different medications. Your challenge will be to find a physician who will respect your concerns and offer you safe options.

        Try not to be alarmed by the worst case scenarios that you read. You are an individual and you will find strategies that work for you.

        Have you tried taking a good probiotic? Read Bev’s posts. She likes the one she takes. Doctors can prescribe VSL#3 which has been a safe and effective probiotic for many patients. I can’t think of a negative or lasting side effect from using a probiotic.

        Regarding diet…what can I say? I used to love carbs like bread and pasta. For me, 2 weeks without those items and I lost all craving for them. There are so many wonderful alternatives. The book, Breaking the Vicious Cycle, by Elaine Gottschall was my go to recipe book for years and then….the magic of the internet brought all kinds of wonderful recipes into my home. Check out Comfytummy.com or simply google: SCD diet. You’ll find a delicious world of options.

        There is a ton of research going on right now about UC and you might be surprised to learn that your friends are aware of the disease. Visit PubMed or the NIH website to learn about the research yourself. You can always offer up that you have an autoimmune disease and that you have food insensitivities. No one is shocked if someone declines certain foods because they made them ill. Sorry to say that beer is one of the foods that many UCers really react to. You can always decline a food by saying that you have ulcers and that you want to avoid the pain.

        In the end, you may be the perfect spokesperson for UC. You can simply state that you have a digestive disease and that sometimes you don’t feel 100%.

        Be patient with yourself and find a good GI doctor.

        Wishing you better health!

        • Chelsea Daniels
          ChelseaMarch 22, 2013 at 9:25 am #

          J,
          My sister and grandma are both health nuts. So my grandma has me on a strict probiotic regimine and my sister has been extremely involving the diet. I have convinced my Dad to do it with me. So as difficult as it would be I think with the support I may be able to pull off the SCD diet.
          Thank you for your input!!

  3. StephMarch 15, 2013 at 2:22 pm #

    I’ve had uc for 8 years and can’t decide if it got easier or if I’m just getting used to life this way. :P only recently am I learning to not care what others think as long as I know I’m doing the best I can. thanks for sharing your story.

    • Chelsea Daniels
      ChelseaMarch 20, 2013 at 10:38 am #

      Well I’m pretty used to it by now so I hope it gets easier with time! And you’re right, I need to stop being so worried about what other people think.
      Thanks for reading my story!
      Chelsea

  4. BarbMarch 20, 2013 at 9:02 am #

    Hey Chelsea,

    OMG you are only 20!!!! I am so sorry that you had to go through what you went through. I am dealing with flares of my own. I have had UC for 14 years so am glad that you came upon this site…..it is very helpful to know that we are not alone. How are you doing on the Imuran? That is my next option and wondering if this will really help.

    Barb

    • Chelsea Daniels
      ChelseaMarch 22, 2013 at 9:36 am #

      Barb,
      You’re so right, I love knowing I’m not alone. To be honest, it’s difficult to separate the side effects from each other. The combination of Imuran and Remicade gives me some swollen joints and fatigue so I don’t know if that will happen with just Imuran. But I do know the Imuran did raise my liver counts so as long as your GI keeps up with your blood work every month to watch for it you should be fine.
      Thanks for the support!

      • BarbMarch 22, 2013 at 9:58 am #

        Yes that is what she said that they will have to keep on eye on my liver counts. I am just hoping that c-diff test comes back negative and we can get started on getting myself into remission. I have been going to the bathroom for almost a month now and even though it slowed down I still don’t know how much more of this I can take.

        • Chelsea Daniels
          ChelseaMarch 27, 2013 at 3:48 am #

          I know this will sound crazy but I felt like walking helped jumpstart me into remission. See, I was in the hospital during the worst of my flare up and the beginning of my Remicade regimen so the only thing I could do to distract myself was walk around the facility. Also in the UC support group I went to they said that they noticed excercise helped them too. That’s something you can do for yourself which is nice cause I know how much it sucks to depend on someone else for feeling better. So next time you’re feeling up to it drive to your nearest mall and walk (the walking helps to speed up your bowels so make sure to know where the bathrooms are).
          PS: You won’t believe how much we UCers can take, I was once in your position thinking there was no end to the bleeding or bathroom trips but I promise there will be a turn in your journey, you just have to wait a little longer. (That sounded so lame but oh well.)
          Let me know how it goes!

  5. Cyborg1939March 21, 2013 at 10:41 am #

    Ms. Chelsea. As a senior newly diagnosed with UC ( secondary to clinical history and Prometheus blood tests) I too wish you well ASAP. You must ramp up your readings and learn learn learn all you can on UC. Your doctors must do you right, so be assertive. Do probiotics and the best with diet as possible. Meditate some. Then use your wisdom to teach and help others much younger than you with this vicious condition. Your smile is wonderful. Your words reveal a beautiful soul. Time will heal your colon quite a bit. I assure you of this.
    Pax. Dr. G.

    • Chelsea Daniels
      ChelseaMarch 22, 2013 at 9:53 am #

      Dr. G,
      I can’t express to you what these words of encouragement mean to me. I have been on the fence for a career path and I had tentatively chosen a path in hospital social work. Who better to counsel people stuck in the hospital than someone who was in their shoes? Through my feelings of helplessness and vulnerability, I can now know I really do have the opportunity to have an impact on people’s outlook and experience. I really appreciate your response.
      Thank you.

  6. judith kershawOctober 26, 2013 at 7:22 pm #

    Hi Chelsea. My name is Judith Kershaw. I live about 40 minutes from Lafayette. I haven’t been diagnosed with UC but a month ago spent ten days in hospital due to antibiotic related C-diff. CT scan showed I had colitis. Two weeks of Vancomycin and Flagyl and so far testing negative. Paranoia has set in because many people have several occurances. I was very critical upon admission…It is a toxin that affects one from head to toe. I have done research and discovered that fecal microbiota transplants are effective in curing recurrent c-diff as well as ulcerative colitis. You don’t have to suffer. It is an inexpesive procedure with great success. I hope you feel better and hope you check into this for your colon.

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